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Friday, January 23, 2015

The Flamingos are going great!!! We thank all the families that have been involved and continue to pass them on to support Kaylie. This has to be one of my favorite fundraisers I have done. I love hearing the stories of those homes that are flocked that have little kids. We hear they think they are chickens, or purple ducks… I even had a little boy catch us in the act of picking the flamings up. My heart just broke for the look on his face! Before we leave for NY, I'm going to surprise him with his very own, one night!
So, I had said before I was trying the whole social media outlook of things this time around. Its great in all, for the small percentage that "likes" Kay's page. But I feel like I can't write the posts I want to write on there… I feel like something holds me back. Maybe I will write on here, and occasionally link them to her page, who knows. We are down to a month in a half. This time around is different. I had a lot of fear last time, just like any normal parent would be with their child going into surgery…. but to be honest, this time is different. I have this horrible pit in my stomach. This surgery truly scares me, I can't stop thinking about all the horrible possibilities…. and I don't know why. I didn't do this last time. I was so positive last time… and I just can't seem to bring myself to that point! Maybe its the fact that this time she is having 8 screws put into her skull and cervicals, and that there is a huge artery near the placement points… or maybe its the fact I am just so tired of living in this life of my daughter having these problems. I just want her to have a break…. for good.
The whole thing sucks! I'm just having one of those days! :/

Thursday, January 8, 2015

Did you wake up to a flock of Purple Flamingos in your yard… or was the above the scene in your neighbor’s yard??? This is “Flocking for Kaylie”…

**Note: If you are a homeowner with flamingos in your yard, please check the "info tube" on the sign.

“Flocking for Kaylie” is a fundraising event to help support Kaylie Barnes. Kaylie is a 2nd grader at Truman Primary. March of 2012, Kaylie was diagnosed with a brain disorder called Chiari Malformation (Kee-AR-ee). Chiari is a congenital anomaly in which two parts of the brain, the brainstem and the cerebellum, protrude through the opening at the base of the skull. She suffers from many symptoms of severe headaches, ear pain, eye pain, fatigue, light & noise sensitivity, clumsiness, and Aphasia (word finding, word retrieval and recall issues). Her parents sought out a pediatric neurosurgeon highly experienced in this condition and related conditions, which is at The Chiari Institute of New York. In July of 2012 she underwent a brain surgery, surgery was not a cure; it helps relieve some of her symptoms and the progression of this disease. Since the surgery things have gone well, till this year, some symptoms have returned, some new, and some a little different. This past fall Kaylie had a few different MRIs, which showed she has a related condition to Chiari. She has Retroflexed Odontoid Process, and will need a cervical fusion of the neck. On March 11, 2015, Kaylie will have this surgery. To help off set the cost of travel and medical bills we are fundraising for Kaylie.

Why are the flamingos purple??? Purple is the Awareness color for Chiari & Related Conditions.

Join us in a Flocking Fundraiser for Kaylie! If you live in the Moore/Norman area of Oklahoma and would like to “flock” a friend, please contact us here, and we will send you the order form for flocking! It is a $25 donation to flock a friend.

Flocks may not migrate outside the Moore/Norman City Limits or onto public property or apartment complexes. Flocking is done in Good Spirits and is not meant to be malicious. The last flock will migrate North on March 1, 2015.

Please pass on to your friends the excitement of being “Flocked”!!! And thank you for supporting Kaylie!

You can read more about Kaylie on this blog, or you can visit her Facebook page “Kaylie’s Chiari”.
You can also make a donation through Kaylie's GoFundMe Account or donation can be sent to:

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About Me

I am the owner & writer of this blog. I am also the mother of Kaylie, Mason and Abby. This is a blog of our personal story dealing with Chiari, and related conditions. This is not to substitute for medical advice, please see a physician for that... this is just our story and our experiences.

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A Huge "Thanks" goes to TCBOTB for the design of this blog

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Please Note: All images are protected under United States and International copyright laws and belong to www.kaylieschiari.com/ Amber Barnes. Please respect artists' copyrights by only viewing the content of this site and pages within this site on your computer in its live published form. Altering, printing, copying, saving, distributing or any other unauthorized use of the images or content on this site requires written authorization. I would gladly assist you in any image needs from this site, just drop me an email. You can also credit: kaylieschiari.com